Following my 6 month check up a couple of weeks ago - which lasted not quite 8 minutes! - I rang Dr Rod Hughes' secretary and arranged to see him yesterday. Well, what a difference! OK, I know I was paying to see him but, for the first time since I started this illness, someone LISTENED and EXPLAINED. Mind you, I wasn't pleased to hear what he said but at least I know where I am now.
Basically, yes I have PMR but I don't have - and have NEVER had - Giant Cell Arteritis! The symptoms which I've been having are actually the side effects of the steroids and the fact that the steroids have been constantly increased means that I've actually been "feeding" the symptoms. He explained that, when I had a scan prior to my appointment for the Arterial Biopsy, it was actually an Ultra Sound of the arteries which apparently is the Gold Standard for diagnosing GCA. Apparently I was very lucky to have this particular scan because it's not readily available. He also said that the Arterial Biopsy isn't used much now because it's unreliable, so I'm so glad I refused to have it done. Of course, it means that for 7 months I've been pumping into my body a powerful steroid which I don't need and which has given me so many problems. Some people don't get many side effects from Prednisolone but, as he put it, I'm a "sensitive bunny" so I'm having virtually every one known to man. When I listed my side effects and when I showed him how my arms and legs are constantly bleeding, he was really horrified.
I had copied as much as I could of my previous tests and appointments but the local GP who agreed to refer me to Dr Hughes had already sent details of all my treatment to date, hence Dr Hughes was already up to date when I saw him.
So, the next thing is to get the dose reduced but, as I've already learned via this forum, this has to be done very slowly. I've already reduced to 19mg per day (I started the 19mg dose on Monday) but he thinks the most I will be able to reduce by is 1mg every two weeks. Then when I get to 10mg, the MOST I will be able to cope with is 1mg every month and he emphasized that it's very important that I listen to my own body. Methinks it's going to be a very long journey!!
So, as I said at the beginning, I'm pleased to know what exactly is going on with me but am furious that nobody looked at my results, meaning I've been taking between 35 and 40mg of Pred for7 months. I'll just make sure that I don't see my original rheumatologist again and, if I have any more problems, I'll go back to Dr Hughes, even though it means I will have to go privately again. After all I've been through since May of last year, it will definitely be worth it.
And again, many thanks to you all for your support and advice in helping me to start being able to feel positive again.
Jan
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OMG, your post... WOW! I just cant believe this has happened! I am happy you saw Dr Hughes, he is wonderful, isn't he? ...but I'm gobsmacked at his news and so very sorry you are having to go through this nightmare. I hope the taper down goes easily and without further complication. Best of luck!
Wow Janann! What s story. I am still questioning if I really have GCA. Can you tell me what the name of the scan is that proved no GCA, and did you have it right after you were diagnosed or before you saw the new doctor, or after you had started steroids. Why were you initially diagnosed with GCA in the beginning?
Hi. I only know that he referred to the scan as an Ultra Sound. I'd been on Pred for two months when the original rheumatologist arranged it and it was actually done the same day as I was due to have the biopsy. But, the doctor who was due to perform the biopsy was surprised that he'd been asked to,do this because I'd already been taking Pred for the two months. Hence my decision not to have it done. I was originally diagnosed with GCA because of the very symptoms which I now know were side effects!! I'm hope you begin to get some answers - I found the fact that I didn't understand what was happening to me to be as distressing as the actual illness. Good luck in your investigations. Let me know how you get on.
Yes the whole thing was so rushed because of the seriousness of GCA and possible vision loss that there was no time to learn and research GCA, a disease that I had never heard of before.
So you didnt have GCA symptoms until after you were put on prednisone? (The headache, etc). Any visual symptoms? Did they diagnose just because of blood tests (elevated sed rate, CRP) and the PMR muscle pain, etc. ?
So you had the ultrasound done by the new specialist after being on prednisone for 2 months and it told him no GCA
I have an appointment today with the rheumatologist and I will ask him about an ultrasound.
Like you, if I don’t have GCA after all, now I’m on 40 mg prednisone and getting off it is not the easiest thing Maybe I’m just in denial, and haven’t reached acceptance yet of what’s happened to my body
Hope your journey through this goes smoothly, keep in touch, and I will too
Getting from 40mg down to 10mg is not difficult - providing you can put up with the steroid withdrawal that is pretty much bound to happen. But ONLY if you don't have GCA.
'I found the fact that I didn't understand what was happening to me to be as distressing as the actual illness.'
This is so true. It's so hard to get answers - nobody in the NHS has time, even if they have the knowledge or the interest. In the early months, not knowing what was causing which symptoms, or what was best to do about it, made things even worse than they would have been. Much worse for you, from the sound of it.
OK - can't change the past. Face forward. Deep breath. Onwards n upwards . . .
"OK - can't change the past. Face forward. Deep breath. Onwards n upwards . . ." These were Dr Hughes' comments as well!! I'm trying to take this advice and not dwell on things I can't change. Easier said than done though........
There is an ultrasound scan technique that is relatively new and not widely available simply because the training has not been rolled out nationwide yet. If you have someone in the department who participated in the TABUL study looking at how good u/s is compared to TAB (biopsy) then you may get it. Southend, Leeds, Bristol, Luton Dunstable and a few other hospitals can do it. Others may be able to tell you where,
I just thought I should let you know that I replied to Mstiles questions by PM. I needed to clarify some anomalies regarding the order of my treatment and I didn't think I should get into such details on the main forum. Being still quite new to all this, I hope I haven't done the wrong thing?
Thank you for explaining the ultrasound scan in such detail - unfortunately it was never explained to me in such detail, hence I wasn't aware how important the results would be. Mind you, the six monthly appointment system hasn't helped!
Oh gosh Jan! I am so glad that you are in good hands now . I really would be thinking about making a formal complaint. That woman has really let you down. It was a female Rheumatologist wasn’t it?
How are you feeling now? You are on a PMR start dose, so take it steady. It is great that you don’t have GCA but how absolutely gob smacking!
Thank you Jane. In hindsight, the original rheumatologist - yes, she's a female rheumatologist - was good to arrange the Ultra Sound but the problem lies in the fact that the results were never relayed to me. Of course, the fact that I've only seen her twice and at six monthly intervals doesn't help with the passing on of information!! And the fact that my appointment with her two weeks ago lasted all of 7 minutes 41 seconds didn't help!!
Exactly, you’ve just framed the complaint. My Rheumatologist writes to my GP, copying me in, after each appointment. The weeks of unnecessary steroids.........poor bunny .🐇🤦♀️
Good luck with the taper and glad to hear it’s not GCA. I have s similar story to yours except I had the biopsy, months of high dose steroids and severe jaw pain, only to find out it’s a jaw infection! Now I am enduring brutal withdrawal pains. I told the doctor today you wouldn’t treat a dog like this. I am starting my own taper schedule today as I have lost all confidence in doctors. Still no answer for the initial PMR pains I had in September.
I can really understand how you are feeling. I was prepared to endure the effects of steroids because I really thought it was GCA but to be told it was totally unnecessary was so upsetting. Luckily Dr Hughes believes in a slow taper so I will just take my time. Good luck with your own journey.
Lovely to hear of something positive, which I always think helps us to improve!....I was also (I think) like you had an ultrasound (like when you are pregnant?)but he was such a useless rheumy, he said I didn`t have GCA.... and he`s not sure if it is PMR, (6 years later) but dosen`t know what is wrong...... but he did ask if I`d had surgery on my head, to which I replied....(couldn`t help it) why can`t you find a brain?.....no response whatsoever....and he`s the reason I may go and see Dr Rod Hughes, who must by now be realising he is seeing all the unhappy patients who just don`t get anywhere and are left floundering....I hope you now continue to get support and get some relief I am at 10mg, and will be lowering very slowly and hoping for the best, as I do for you and all of us.... which is all we can do...
Thank you Longtimer. Yes, I'm really pleased to be able to post something positive - but it still upsets me that there are probably other people in a similar situation but they aren't able to see a rheumatologist who really understands these illnesses. I sincerely hope that your own journey improves. Take care
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